Hi, everyone....I'm new here and this is my first post. My platelets have climbed from 450 in September to 540 recently. I hadn't had a CBC done for a couple of years prior to September. In the fall of 2017, they were apparently at 330, so on the higher end of "normal". I didn't really have any symptoms back in September/October other than a prickly feeling all over. Prior to that I would consider myself healthy. In the last couple of months, I've developed regular upper abdominal discomfort plus what seems to be erythromelalgia -- red, burning hands and feet -- I also feel burning in my arms and face often as well. I have trouble sleeping many nights due to this burning. I've been taking 81mg of aspirin for 2 weeks, but I don't really notice a difference with the burning. I've had numerous tests done (abdominal ultrasounds, colonoscopy, mammogram, bloodwork), but the only anomaly so far is the platelet count plus a positive ANA (1:320, speckled). I've also had a CT scan but results haven't been made available yet. I met with my hematologist today and he said autoimmune diseases (as per the ANA result) typically result in low platelet counts. He also said that I wouldn't be having any symptoms related to ET with my platelet count in the high 400's, low 500's. My platelet count would have to be 1 million and above to experience symptoms. Having said that, he will be do a bone marrow biopsy in a week's time to check. Results won't be available for 4 weeks though.
My question is does anyone here experience symptoms like mine with platelet counts in the high 400s, low 500s? Trying to figure out what's going on with me seems to be such a long process.....
Thanks!
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Although elevated platelets is a feature of some MPNs it can be the result of other conditions. It can take a long time to get a diagnosis but your experience is not unusual. The bone marrow biopsy will move things along but a full analysis of the samples takes time.
Keep a record of your symptoms and review your "lifestyle" (smoking, drinking, food, sleep, activity levels etc). It will all help with your diagnosis and a treatment plan.
Finally, platelet counts are not always a good predictor of symptoms, everyone is different.
Hi I am a 71 year old female just diagnosed with ET/JAK2 about three months ago. Prior to that and now, I have had headaches, dizziness, cold and numb toes and sometimes hands, chest pains and acute bone pain especially in front thighs--my platelets are only 487 and I am on 81mg
aspirin. They want me to go on a chemo drug when it hits 500 but I am
researching naturopathic alternatives. I definitely know you can have
symptoms even if your platelet count isn't high. I will keep you in my prayers on your journey. Best of luck to you. Judi
I can confirm that my numbers are similar to yours.... I was diagnosed ET JAK2 + last April.... I have had severe symptoms including headache for a year today.... and extreme fatigue.... I’m under guys and it has been explained to me symptoms are not to do with numbers it’s how your body copes with the diagnosis.... someone could have 1 mil platelets and have no symptoms but someone like me who has readings from 450-650 and have symptoms. Please do not let doctors tell too that your not really feeling these feelings. They are real! X
I have woken up this morning with horrendous leg pain! Mainly in the thighs... I wonder if this is connected? I had to have a warm bath to ease the pain.
You aren’t alone. I have symptoms and investigating the cause led to my diagnosis. My platelets have been in the 600s, but I also have leukocytosis and very high basophils. Aspirin and more water seem to be helping.
I am sooo pleased to read your post. I am fed up with being told that I can't be exhausted because my platelet counts are not high ( they are virtually identical to yours). It is such a relief to know that Guys made the point about the numbers that you mentioned.
I had a check up this week and my platelets have dropped to 297.... I’m feeling a bit better than last week regarding the fatigue but I still have a headache.... the disease is still there even though your number are within the range.
In my experience, the symptoms that you are describing were evident for me also before I had my first TIA, (minor brain stroke).
Originally diagnosed as ET - CALR+ Type2, later changed to MF. However, my Platelets have always struggled to become reduced, and I have had two (2) TIAs.
The Tinnitus, was like an early warning signal, in my experience... Hence, I would be keeping a very close eye on your Platelets, if I were you...
Welcome! This site is my life support. I have Et (Calr) if my platelets count is higher than 450 I’m almost sofa bound. It’s as if I’m wearing a lead suit so on that count your heamo is DEFINITELY WRONG !!
Regarding other symptoms I can’t help you but I’m sure others can.
I really appreciate all of the replies! I know that it's not a given that I have ET because I know from all the research I've been doing that the high platelet count can be secondary to another condition. My symptoms may be related to that other condition. The number of tests still to be done seems to be dwindling, so hopefully the CT scan and/or bone marrow biopsy will provide some clarity. If nothing comes up from those, I'm going to go and see a functional medicine doctor I know of who is good at looking at all of your symptoms together, instead of trying to isolate symptoms to a specific bodily system.
I find it very frustrating when some medical practitioners I've seen over the last 4-5 months suggest that I have anxiety! Well, yes, I do have some anxiety now because I'm not feeling well, but as I said, prior to September/October, I felt fine. I don't think the anxiety is causing my symptoms, but the symptoms are definitely causing some anxiety for me. They seem to suggest that my symptoms are all related to anxiety because my platelet counts "aren't that high". Ugh.
It's interesting that a number of people don't experience any symptoms or just mild symptoms from what I'm seeing on this forum. Here is a link to an article that indicates that many people do have a variety of symptoms:
Anxiety! Of course you have anxiety you know something is wrong. I’m afraid I suffer with a little anxiety now it’s because I don’t do or think about things as fast as I used too in turn I can’t cope because of my fatigue.
I know that feeling blue_reader! Had been recommended that I take a Valium for my symptoms 🙄
I’m only recently diagnosed ET JAK2+ so still learning but I can conclusively tell you from my experience that symptoms are possible with relatively low platelet counts.
I’ve been 560 recently with fatigue and itchy/burning feet consistently. In May (pre diagnosis) I had crushing headache, heart palpitations with shortness of breath, muscle cramp with platelets 580. For 10 years prior I’d been having visual disturbances/silent migraine. All possible to explain away (in my case) as post-covid, medication side effects, hangover from a major thrombosis 15 years ago, and of course - Anxiety!
It’s when I read other ET patients descriptions of what those symptoms FELT like that I KNEW the symptoms I had were related to ET.
Just one example is that silent migraine can generally come with visual disturbances, in 10+ years of describing mine to a team of neurologists they had all thought it was an unusual presentation but pretty meaningless, we paid no real attention to it. Since ET diagnosis I’ve read 4 descriptions from MPN patients that IDENTICALLY mirror my experience - the exact location, shape, appearance & duration of the visual disturbance.
Of course there’s a mind-body effect, of course anxiety is a feedback loop, of course there’s always multiple possible conditions that can explain away every symptom. But sometimes you just know, and it sounds to me like you know 🤷🏼♀️
Yes. I have platelet levels like you right now but I have no other symptoms. My ultrasound and all blood tests except platelets are normal. I see a hematologist in a month. Keep in touch.
Hi. I’m sorry you’re going through this. Has your doctor done blood work to test for gene mutations often found in MPN patients? Also, the more you’re on this site the more you’ll realize that a lot of doctors stink (I’m being polite) and except for MPN specialists they’re unlikely to be very good at diagnosing & treating you. Please keep us posted. Good luck. Katie
Hi, Katie...No, the doctor hasn't done blood work to test for gene mutations. He said it's best to go right for the bone marrow biopsy because it will give the most information. I'm tempted though to ask him for the bloodwork though too because I assume those results would come back faster than the result for the bone marrow biopsy.
I see you mention a MPN specialist can we ask to be referred to one of these through the NHS or is it something we have to pay for? Considering this as not get anywhere with current haematologist.
Hi. I’m in the United States where it’s very different. I encourage you to ask Mazcd what is necessary. Also start a new post asking how to get NHS to let you see specialist. Many on here can tell you the steps. It’s great that you’ll be doing that because only an MPN expert can do a good job treating you. Don’t give up until you get one. Best of luck! Katie
I have episodes of feeling light headed. ET: Platelets are 940
These episodes l believe in my particular circumstances are more linked to poor breathing when l stress or panic
They become stronger if l ruminate on something. It’s almost like a glitch in anxiety management. I have been trying different techniques sport really helps and l practicing breathing. If l am in a good place it stops
My point is the impact of stress is far greater then appreciated by doctors and may compound some symptoms
My platelet counts are normal now and I still experience those symptoms just not as often. When my platelets were 650ish I often almost nightly had the burning tingling and couldnt get to sleep. So your dr. Is 100% wrong about only having symptoms of way higher. I am totally managed as far as my counts go amd I still get most of the symptoms I had before just not as bad or as often. But since starting hydroxyurea I have extreme fatigue and brain fog. I've been diagnosed with PV with Jak 2 mutation. Hope that helps...maybe seek another specialist, for another opinion, if your able. Hope you get some relief.
Yes. I have achy burning sore hands/fingers with slight swelling and redness. I wake up in mornings so sore. Ribs can hurt as can elbows and intestines. Head aches are rare now. ER Calr 1 diagnosed 2 years ago and take Hydroxyurea 500 daily with baby aspirin. Platelets run around 435 now. Highest was near 600 before treatment. Drs are not much help for ET patients with life debilitating symptoms. Many ET folks have no symptoms. Best to you. If an MPN, try to work with a doctor you connect with!
Yes. Mine are 470 and i am having a hell of a time. They are wrong to say you cant have symptoms related to mpn because platelets are not high enough. I am in missery and like you aspirin is doing nothing for me. My cheat hurts my stomache hurts and i get pressure in my head and headaches every day as well as legs and feet burning and hurting terribly.
Hi there blue reader! I recently found out (back in 2019) that I've had elevated platelets since 2015. They have been consistently high since then, and now I'm sitting at 501,000. My mother recently died at the age of 66 from chronic myogenic leukemia. Her dad also had it. I do have symptoms similar to yours, with the upper abdominal discomfort, by way of pressure and a feeling of fullness. I also occasionally experience burning on the bottom of my feet, but not my hands. My mother had the redness to the hands and feet that you are describing. Her platelet count always hung around 900,000 before she started getting treatment. So, I do believe that you GP is mistaken about the symptoms. Good luck getting answers to your concerns. I completely understand the frustration and concern.
Hi Weasel2020......If you check out my profile, you can read my health journey over the last 2 years since my initial post (including post-covid issues). In terms of an MPN, I ended up being diagnosed with PV, JAK2+ with elevated platelets. Still have the upper abdominal discomfort, tingly feelings, fatigue 2 years later. Burning has not been too much of an issue for me anymore. I'm on an anti-coagulant and phlebotomies, so maybe the anti-coagulant helps with the burning? My platelets now tend to hover around 600, so gradually climbing over time. Yes, the whole discussion of symptoms with the doctors can get frustrating. I now have in place visits with a local hematologist every 6 months and an annual appointment with an MPN specialist, so I make sure I'm always well prepared for my appointments with questions and things to discuss All the best on your journey as well!
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